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May 17, 2011

Medication Changes

Bertrand had an appointment with his neurologist today. We updated her on everything including the changes in Bertrand, both positive (mood, interactivity) and negative ("weird looping seizures"). The neurologist is pleased with his progress and believes that Bertrand's new seizure type is actually a kind of partial seizure, since he retains some consciousness and it affects him asymmetrically.

Bertrand's blood draw from last week had his depakote *just* in effective range and his lamictal high in the effective range. We will be increasing his depakote to 250mg twice a day and lowering his lamictal (since depakote raises lamictal levels) to 25mg twice a day. Another blood draw will be taken next week and then in a month. If Bertrand's seizures have improved by then, we can begin a SLOW wean from keppra (800mg will take 8 months).

It is worth noting that Bertrand's liver enzymes have remained steady or have even fallen while on depakote and lamictal, both of which are metabolized in the liver. Depakote is known to be particularly harsh on the organ. Not resting on our laurels, we are upping Bertrand's carnitine supplement (Carnitor SF) to 4.5mL twice a day, which should continue to protect the liver. And, since depakote binds with vitamin D, Bertrand will be getting plenty of sunshine this summer along with his 1000IU vitamin D supplement. :)

If Bertrand's seizures do not improve on this current drug cocktail, we've already begun discussion on the addition of another drug: topamax. Topamax is known to work well on multifocal seizures, which are the kind Bertrand has. We know that there is an very small chance that a 4th antiepileptic drug will help, but of course we have to try. Bertrand has little to lose from another failure but so much to gain if we succeed! We will never give up.

PS - I am very proud to say that Bertrand was congratulated on his weight AND his weight-bearing!

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The Bertrand Might Research Fund has been established at Sanford Burnham Medical Research Institute, a 501(c)3 charitable organization. Your donation will help Dr. Hudson Freeze’s lab begin to unravel the mystery of N-Glycanase deficiency, and hopefully find a treatment in the near future.

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